Bernadette Scarduzio, who lives with a rare neurological disease, argues that medical marijuana has helped normalize her life and has the potential to help reduce opiate overuse in the disabled community.
For Bernadette Scarduzio, living with Charcot-Marie-Tooth disorder (CMT) has been anything but easy. This hereditary disease is known by few, but it affects the nerves that control a person’s muscles. Over time, Ms. Scarduzio’s limbs weakened, causing her to give up her passion of personal training and requiring her to use a scooter for mobility. Despite this, she has become one of the foremost advocates for CMT awareness.
It all began with her movie titled Bernadette, which came out in 2013 and helped to put CMT on the map. Since then, she has advocated for awareness as a staff member of the Hereditary Neuropathy Foundation (HNF), an organization offering aid to those with CMT and other related diseases while also funding research. In recent years, Ms. Scarduzio has also been vocal in her support of medical marijuana.
On August 16th, she joined Merion West to discuss CMT, her use of marijuana for therapy, and medical marijuana’s legislative future.
For those who aren’t familiar with Charcot-Marie-Tooth (CMT) disorder, why don’t we start there? What has your life been like living with CMT?
Charcot-Marie-Tooth disorder is an inherited, degenerative, progressive neuropathy that affects your peripheral nervous system, which controls your arms, hands, feet, and legs. There are all different types of CMT. It is in the rare community and known as a rare disease.
Not many people have heard of it. Growing up—especially in the 80’s and 90’s—I was educating doctors on it. It’s really hard to have an illness that not only has a funny name, but no one’s really ever heard of. No one could really identify with me because they didn’t know of it. Even 10, 15 years ago, there wasn’t really much about CMT out there.
But now, things have changed, and I definitely think that I was part of that movement because of the film. There was nobody talking about it. No one was showing themselves walking with CMT. There was nothing on YouTube and nothing on the Internet. No patients showing what it was like to live with a neurological disorder like CMT.
It falls under the umbrella of muscular dystrophy, like CP (cerebral palsy), ALS (Lou Gehrig’s Disease), and MS (multiple sclerosis). My goal in life, where I find my purpose—and something I enjoy doing in my work—is helping people with my illness and with other illnesses learn how to cope, do whatever they want to do, and navigate life despite having a disability.
For you, how does marijuana aid in the battle with CMT?
I never really smoked marijuana growing up. I had tried it a handful of times, but I never really looked at it as therapy. In my house growing up, pot was a drug. That’s what it was when I was a kid. I’m 39 now.
When I was about 22 or 23, I had bought my own home, and every now and again I was taking medication. I would have surgeries, and they would give me Percocet or something to help with the pain. I had 28 operations from when I was 12 years old until my mid-30s, and they were constantly trying to give me medicine.
I really didn’t like the way it made me feel. There were other things I had to take like stool-softeners, and I wasn’t sleeping right. My moods weren’t right, and I didn’t feel like myself. So as soon as the surgery was done, I would get rid of the medicine. I never wanted it around. I would mainly do massages, or stay in the pool and do other things.
Then a friend of mine was like: “Bern, you should try [marijuana] just to help you sleep and for things like that,” so I dabbled in it. I wasn’t afraid to smoke pot because I had tried it.
I realized that it was helping me sleep, eat, and getting rid of my pain. I would get shakes and the tremors that were also definitely going down. And, it was instantaneous.
My anxiety was also really bad. Ten years ago, I wouldn’t go on planes and was very cautious of places I went and what I was doing because of my disability. Can I walk? Is it going to be too far? Am I going to get sick? Are we too tired? All of these “what ifs” would keep me home.
When I would smoke or vape, I felt like myself. I felt stronger and all that anxiety eased. I wasn’t scared to live my life despite possibly falling, asking for help all the time, or having to take breaks. That stuff can be stressful. I realized my anxiety’s going away, my pain’s subsiding, my sleep is getting better, I’m eating better—I’m not stopping.
When I told my parents, I smoked weed, my mom didn’t like it. My dad wasn’t a big fan, but he understood because he also had CMT. He didn’t smoke pot, but he knew I didn’t take any medicine. He could understand how it helped me.
You talked about your family’s reaction to your smoking. At any point in the past, did you tell your doctors you were using it to help?
Always. I’m very upfront, honest, and open with my life. I never felt the need to not tell anybody. I didn’t feel like I was doing something wrong because I knew how sick I was and how my body was. I didn’t care. My doctors 100% backed me up. They were like: “If it helps you, do it.”
I have my family doctor, Dr. Friedrich, who said: “If I wrote scripts, I’d write you one in a minute.” He said years ago, “If it were legal here, I would certainly help you.” Other doctors too. My physical therapists, occupational therapists—they all supported me.
It’s definitely different now than it was; things are really changing. Five years ago, I was a little skeptical talking about it. When the film came out in 2013, I was scared of talking about it, but I did put it in there. I’m glad I did that because I knew it was coming—the revelation was coming. Five years from now, it’s probably going to be no big deal.
Backing up just a little, you said your mother wasn’t supportive of your smoking at first. In your opinion, how did marijuana get such a negative perception?
It was—and is still—a gateway drug for people and for children. I don’t think it is something just for anybody. I think it’s something that people need to try and look into. It may not work for some people. Everybody is different.
I feel for the majority of people that are suffering, or that have some sort of disability—even mental disability like depression, a form of ADD—it’s worth looking into.
My mom knew that I was using it to help with my pain and manage my daily life living with CMT. She was okay with it, but she wasn’t thrilled. But now it’s like a whole different story. She’s excited how good I’m responding to the oils, and I’m able to try specific things.
I know exact sativa and indica, and which ones work for me—also, the wax, oil, or flower. There’s a lot of different ways you can consume it and so many cool ways for me to explore the medicine.
So it sounds like your push for it is rooted in its medical availability. What is your stance on it being available recreationally?
Obviously, I would love to see it go recreational. I think then it will take the stigma away from it. I feel like it won’t be as much of a gateway drug if it’s not seen as badly—like “this is so bad.”
I’m disabled, and I see and hear so many people and disabled community friends that suffer. My main concern is first—getting the disabled community off opiates and trying to help people that are in rehab for being drug addicts. They’re known for being drug addicts because they had surgery for a debilitating illness that’s not their fault.
Recreational will be great, and I think it will happen. But the medical part is what I’m focused on and what is more important to me.
What do you think about the process by which it’s being legalized? Is it okay going state-by-state, or should there be a federal ruling?
It sucks. I can’t travel with it, and it’s weird that I can cross over a border and get arrested. However, I’m more of an optimist. I look at the glass being fuller. When I see states saying “Yes, we vote in favor of medical marijuana,” that to me, is a positive step in the right direction because, eventually, it’s going to be all of [the states]. They’re getting there.
Pennsylvania began permitting medical marijuana under Governor Wolf in April of 2016, but it took until February of this year for it to actually become available. Is that too long? Is there an easier way the state could have managed the roll-out?
Of course, it’s too long, but what am I going to do? I know there are people fighting for that, but I’m like: “At least it’s coming.” That’s how I look at the world. It’s coming and going to take some time, but the flower has to grow. I get that. It takes time to establish a business—especially something like this that could make billions of dollars—and grow farms. It takes time. You can’t force a plant.
Do you see the current polarized state of the United States Congress standing in the way of marijuana’s legalization process?
People already are: Jeff Sessions for example. Although, I don’t think Trump really cares. I think he knows there are other things to worry about and would sign a bill. I think eventually, a president in Washington will get over it, listen to the people, and hear the benefits.
Every week I read something about how medical marijuana has helped more and more patients and how the ratio of people getting off opiates is going up in states that have medical marijuana. I think it’s going to help a lot of people.
That’s all I have. Thank you for joining us.